Fire and Ice

Over the last couple of weeks things have been up and down - and to be honest, mostly up. I didn't want to jinx it so I stayed away from the blog, knowing that the moment I wrote that things were "pretty much ok" it would all come crashing down. Or maybe I'm getting better at coping? If that is the case then it is true that we can get used to anything. I have noticed that I am more successful with foods like chicken or veggie nuggets (like Quorn or similar chicken substitutes), mozzarella fingers as long as they are not too melty, very buttery scrambled egg with tomato sauce (no lumps), creamy or tomato-y pasta, Pringles, Doritos and Cheez-its. I'm also good with smoothies, milkshakes and other thick drinks - and on very good days, even a latte as long as it is not too hot. Nutritionally, this is a disaster: mostly junk food, barely any veggies and the only fruit is whatever I tip into the breakfast smoothie. I tried making a smooth-but-thick roasted vegetable sou

So, what does a "good" day look like? Well, it would mean that, in addition to a small smoothie for breakfast, I would have this much pasta for lunch: It would start out warm but by the time I finish it (literally hours later), it's pretty cold. If it was a particularly good day, I would have about half of that for dinner and this would take a long time too. Throughout the day I would aim to drink as much water as possible, and on a good day it would be about a glass of water through the day. In tiny little sips.  I repeat - this is on a good day. On a bad day, I would probably have none of this and on a very bad day, even my own saliva is a challenge. Yet doctors continue to treat me as if none of this is urgent. 

It's amazing how many things seem to pivot around food. I've m entioned some before but it seems that every day I discover something new... truly a case of "you don't know what you've got until it's gone." For a start, you know those days when you are tired, perhaps from a poor night's sleep and having to work the next day? Typically on those days, I would definitely have a few coffees and then something like eggs for breakfast. Then I'd try to stay awake by snacking and grazing all day.  These days, as you know by now, these are not options available to me right now so pulling through on a tiring day is much, much harder. I hadn't realised just how much I would depend on food and especially drinks to get me through the tiredness. Without these strategies, it was very, very hard to get through a long Monday after a not-so-great night.  Another surprising food situation I've recently experienced is visiting a Disney park - the snacks and tr

As I thought, good days are followed by not-so-good ones. Once again I'm struggling to eat almost anything , not even the tiny pasta servings I was ok with a few days ago. Definitely frustrating and annoying as I always have the hope that bad days won't return, until they do. It is also a worry of course because I don't know how long this will last and the longer I go without actual food, the worse the health impacts. I think I'm making some progress on how I handle this mentally, though. I may be speaking too soon but I'm trying to shift my thoughts to refocus the anxiety into something else - to try and make this dysphagia something that is here, rather than something I "have". This mental distance between me and my issue does seem to give me some relief from the constant worries. I don't have any evidence but I sometimes think that when I have bad days, I will of course worry. This worry then turns to anxiety which in turn makes swallowing worse. W